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Showing posts from October, 2013

NEW Caretaker Support Forum....

NEW Caretaker Support Forum....
Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forum for spouses or partners who help their loved one cope with porphyria.  To read more about Warrens story as a caretaker for a loved one with AIP view here.
The Caregiver Support Group strives to provide a forum to ask questions, share advice, experiences and provide a sounding board for those going through similar circumstances.
Our goal is to eventually provide multiple resources to assist caregivers in their day-to-day lives. This is your community and your input will help shape this service. Whether you are a spouse, partner, relative or friend of a porphyria patient, we want to hear from you. Contact the American Porphyria Foundation or email us at apfcaregiver@aol.com for more information.
We respectfully request that only caregivers of patients in the active process of diagnosis or with a diagnosis of a porphyria participate in this group.
8 Importa…

Reminders about finding a good APF Doctor for YOU

The American Porphyria Foundation promotes comprehensive care necessary for treating individuals with Porphyria.  This section of our website offers suggestions for finding a local doctor who can manage your Porphyria, options for having your doctor consult a Porphyria specialist, and information on arranging a visit to a Porphyria clinic.Because Porphyria is so rare, few physicians have experience treating patients with the disease.  Most patients are in fact treated But the APF can help by putting your doctor's office in touch with a Porphyria specialist who can offer guidance on your care.For those who need a diagnosis, you may be able to obtain a consultation at Porphyria clinic. Call the APF to reach a porphyria expert at a porphyria center.  The APF office will also guide you to doctors who are not experts but are knowledgeable about porphyria. You may be asked to send your blood, urine, and stool samples for evaluation in advance of a clinic appointment.  Especially if you …

Family Involvement with the Caretaker Support Forum~Please Join

Caretaker Support ForumNew APF Caretaker Support Forum "Please get involved with your family, you may save there life, with encouragement, understanding, knowledge, Doctors experience"~ Purple Light


Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forumfor spouses or partners who help their loved one cope with porphyria. To read more about Warrens story as a caretaker for a loved one with AIP click here.
The Caregiver Support Group strives to provide a forum to ask questions, share advice, experiences and provide a sounding board for those going through similar circumstances.

Our goal is to eventually provide multiple resources to assist caregivers in their day-to-day lives. This is your community and your input will help shape this service. Whether you are a spouse, partner, relative or friend of a porphyria patient, we want to hear from you. Contact the American Porphyria Foundation or email us at apfcaregiver@aol.com

Doris Stevens Letter about VP

Doris Stevens Type of Porphyria:  Variegate Porphyria (VP)
Doris's Letter to PorphyriaDEAR JOHN:
For therapy, a caring doctor had recommended I write about my illness, that I state what it has done to me and how it has affected my life and finally, what I hope will happen no matter how unrealistic. Since it took a better part of my lifetime to unravel the mysterious maladies that plagued me most of my life, it was difficult to write about it in a less compassionate form. It is important to understand when you read this that it is possible to have been born with more than one congenital anomaly. In my case, I was born with a mild Arnold Chiari Malformation which accounts for an inability to nurse, dizziness and clumsiness in infancy and adolescence. Porphyria symptoms were not present until my early to mid-teens.
I am sorry to inform you that I have never loved you. I have truly never understood you and even worse, no one else has understood you either! Starting from m…

What is a Ferritin Test and why is it import to have it checked when you have Porphyria

A ferritin test measures the amount of ferritin in your blood. Ferritin is a blood cell protein that contains iron. A ferritin test helps your doctor understand how much iron your body is storing. If a ferritin test reveals that your blood ferritin level is lower than normal, it indicates your body's iron stores are low and you have iron deficiency. If a ferritin test shows higher than normal levels, it could indicate that you have a condition that causes your body to store too much iron. It could also point to liver disease, rheumatoid arthritis, other inflammatory conditions or hyperthyroidism. Some types of cancer also may cause your blood ferritin level to be high. You may have a ferritin test for several reasons:To diagnose a medical condition. Your doctor may suggest a ferritin test if other blood tests have shown that the level of oxygen-carrying protein in your red blood cells (hemoglobin) is low, or if the proportion of red blood cells to the fluid component in your bloo…

Important message ~ National Porphyria Registry

Important Notice...Porphyria experts have created a National Porphyria Registry-a type of partnership between the porphyria experts and YOU as a way to share information about YOUR health and treatment.  Also, it is the best means to determine the incidence of porphyria and prove that there are enough porphyria patients who want improved health care to warrant government funding.  If we don't speak up, we will be left behind when research grants are presented.    Please join the registry!


Joining the Porphyria Registry is anonymous, and there is no cost to you. All data will be stored in a secure, computerized database. No personal identifying information will be given to anyone without your expressed approval.  Please note that joining the Registry is not the same action as joining the APF.
To better understand National Registries, you can attend the following webinar on Oct 23, 2013. http://globalgenes.org/rare_webinar_series_understanding_rare_disease_registries/
"Remember...…

Biofeedback & Chronic Pains to Porphyria

close windowBiofeedback is a technique you can use to learn to control your body's functions, such as your heart rate. With biofeedback, you're connected to electrical sensors that help you receive information (feedback) about your body (bio). This feedback helps you focus on making subtle changes in your body, such as relaxing certain muscles, to achieve the results you want, such as reducing pain. Biofeedback helped me greatly when suffering daily pain and Porphyria it may help you ask your Doctor about it.
In essence, biofeedback gives you the power to use your thoughts to control your body, often to help with a health condition or physical performance. Biofeedback is often used as a relaxation technique. Biofeedback, sometimes called biofeedback training, is used to help manage many physical and mental health issues, including:Anxiety or stressAsthmaChemotherapy side effectsChronic painConstipationHigh blood pressureIncontinenceIrritable bowel syndromeRaynaud's disease…

Stress Basics

Stress basicsBy Mayo Clinic staff
Stress is a normal psychological and physical reaction to the ever increasing demands of life. Surveys show that most Americans experience challenges with stress at some point during the year. In looking at the causes of stress, remember that your brain comes hard-wired with an alarm system for your protection. When your brain perceives a threat, it signals your body to release a burst of hormones to fuel your capacity for a response. This has been labeled the "fight-or-flight" response. Once the threat is gone, your body is meant to return to a normal relaxed state. Unfortunately, the nonstop stress of modern life means that your alarm system rarely shuts off. That's why stress management is so important. Stress management gives you a range of tools to reset your alarm system. Without stress management, all too often your body is always on high alert. Over time, high levels of stress lead to serious health problems. Don't wait unti…

AIP my weekend experience as we speak

So today I thought I would blog about my experience Sat and Sunday Today.

As many of you know I have AIP.  My symptoms change just as the weather changes.  The older I get the different each "Purple People Eater Attack" gets it, it sets me back.  As of late their has been some major problems with getting medications to help me and admitting me into the hospitals even for glucose, and Panhematin.  I don't even ask for pain meds, but these problems we have been at battle again for the last 4 months.

Back to my story,

 So yesterday my day started out so slow, I was sick to my stomach I thought I was hungry so I got my food, not hungry still ate my food.  1/2 hour later in bed sick, just feeling like im going down hill fast, so I take my dogs for a walk to try to block the pain and the feeling I have.  For dinner I went old school good ole fashioned Mac & Cheese that seemed to keep me at bay.  At the same time as I was just pretending nothing was wrong more intense pain cam…

Sleeping with Sinus pain & congestion with Porphyria

I suffer badly from Sinus Issues, and its really difficult when adding Acute Porphyria on top of that.  So if you suffer like I do I hope you find some relief.
Not sleeping well affects both your body and your mood, but when you have sinus pain and congestion, getting a good night’s sleep may be easier said than done.
The sinuses are empty cavities that reside within the cheekbones, around the eyes, and behind the nose. They warm, moisten, and filter air into the nasal cavity. A sinus infection or sinusitis occurs when there is swelling in the nasal sinuses and passages. You may feel symptoms like pressure around the nose, eyes or forehead, a stuffed-up nose, and thick mucus. Some people also report tooth pain with sinusitis. And if you have allergies, you are at greater risk for sinus trouble, according to The American Academy of Allergy, Asthma & Immunology.
“There are many reasons that sinus pain and congestion get worse at night. One is that allergies tend to be worse at nig…

Discussing AIP with Your Family

Discussing AIP with Your Family
For many people, a diagnosis of Acute Intermittent Porphyria (AIP) brings a long journey of not knowing to
an end. But living with AIP begins another journey. Your family can be a key partner in helping you to manage
the disorder. This discussion guide was designed to help you talk about AIP with your family. Here are some
questions you may be asked and some tips for answering those questions.
What is AIP?
Explain to your family that AIP is a rare inherited disorder that involves a lack of one of the enzymes needed
to make heme. Heme is the oxygen-carrying component of red blood cells and is vital for all of the body’s
organs.1 Because it is genetic, your family members may want to think about talking with their doctors about
genetic testing. Also, let them know that many people who are predisposed to the disorder may never
experience an attack.
Why does AIP cause symptoms like pain and muscle weakness?
Your family may already be familiar with the symptoms of the a…

An amazing life journey with James Beadle and EPP

James Beadles Type of Porphyria:  Erythropoietic Protoporphyria (EPP) I live life with EPP! I was diagnosed when I was six by a dermatologist named Carl Anderson who has since passed away. Up until my diagnosis, my parents had heard it all from a number of doctors. I was allergic to a medicine, or I was allergic to weed killer, to simply saying, "it is just a rash." All the while, I would scream in pain. My parents would help by placing cool clothes on me. I live in sunny southern California in a beach town. All my friends were into surfing and sailing. The outdoors is part of life in SoCal. I did not let my EPP stop me from enjoying the outdoors— though sometimes I paid dearly. I played baseball until high school. I learned to sail. I ran in triathlons and half-marathons. I snow skied and water-skied. I played golf. All the time I endured the funny looks and mean things said about the way I looked and had to dress. I did not let it stop me. Sure, it bothered me when I was …

Fall Time

Have a happy fall- fun- filled weekend to everyone!

“Remember…..Research is the key to your cure!”

Porphyria and background resources

Background Porphyria is named from the ancient Greek word porphura, meaning purple.[1] Porphyrins are precursors of heme, a part of the hemoglobin molecule. Heme is manufactured in a multistep process. Defects of enzymes needed at various steps of heme synthesis result in distinct clinical syndromes known as porphyrias. These syndromes can be clinically classified into those predominantly involving the skin, those manifesting as disorders of the liver/nervous system, and a combination involving all 3 entities (see the image below).
Clinical classification of porphyrias. Porphyrias can be inherited or (rarely) acquired.[2] With the exception of congenital erythropoietic porphyria (CEP), which is autosomal recessive, all other porphyrias are inherited as autosomal dominant disorders. They invariably result in accumulation and increased excretion of porphyrins and their precursors. Some porphyrias have acute presentations (acute intermittent, variegate, hereditary coproporphyria), wherea…

Series: Porphyria life my Journey ~ Part 1

Choices, decisions, what medications should I take, why do I have to see the Doctor for that matter what kind of Doctor do I need to see and why?  This porphyria disease has me really worried...

      What do I say to to Doctor how do I describe what I feel.  
Do I share the emotional side of it the physical side what it does to me, I know I can do this but right now,  I'm not feeling good at all.  
 I have to face a new staff and new doctor, will they listen? will they care?  Have they ever heard of this disease?  Will they understand and listen to me.  I'm so scared, nervous and sick.

Where do I begin??????????  Has this ever happened to you?  I really would like your input I will be writing a short series weekly so that we can discuss things on this blogs.  Many of these questions we have all faced and the worries that go along with it.  

So please take some time to really think about this stage maybe it was so long ago, maybe your new with this, maybe your waiting and don't…